Monday, September 5, 2011's MS

The absolutely wonderful Fiona, MS nurse extraordinaire, came through and I got an appointment with neurology. Even better it was with the neurologist I wanted (is it anal to have a preferred neurologist?).

The appointment was today and after reviewing my history the Doc said yes it was MS. So I am not neurotic despite what a number of physicians have thought in the past! The fact that I have developed at lisp in my 40s is not regression to childhood, when I think food is going down the wrong way - it is, I haven't had to give up marathons because I'm old - my legs are dodgy,I didn't fall down the stairs three times because I'm clumsy. It's all because I have MS!

So now I'm in the system and we're begging Pharmac to let me have interferons - at a cost of $1322.89 for a months supply! Then if they say yes I have to man up and give myself a sub cut jab every second day! I based my choose of interferon on shortest needle (you can have a weekly dose but the needle is a mean long intramuscular beastie), coolest auto injector (it rings like a cash register when you're done!) and lesser number of jabs a week (every second day vs daily). It apparently makes you feel like the after effects of a wine binge so it'll be bedtime jabs for me. Plus I get to mix it! Love chemistry!

I had to do a 500m walk assessment which resulted in a referral to physio and orthopedics for a foot brace! Apparently they are no longer ala Forrest Gump and more discrete - not sure how discrete a foot brace can be! When i googled them they looked anything but!

There is also the issue of stairs - I can't leave the house without ascending stairs. So it may mean a move in the future. The irony of buying a house with stairs because that was what Danae wanted and now she's left home has not been lost on me.  Hopefully Simon reattaching the stair rails may be a short term solution.

So now it's really a waiting game! This is an individualized disease so no one can tell you what will happen. My only proviso is if I have to have a wheelchair I want a really cool one with cool wheels in a cool color! You can get attachments things so you row rather than push the wheels. Apparently there is a huge wheelchair tennis community - now if I could just play tennis it would be great! 

I refuse point blank to ever use a walker. A) they are aesthetically not pleasing, B) they make you hunch over and C) they are not me.

I've been using my crutch and that's been working well - better than the very attractive floral walking stick I also have. It means I can still get around Sylvia Park which is imperative.

So here I am, diagnosed, labelled, disabled. Now can I get a parking permit!


Ralph and Rachael said...
This comment has been removed by the author.
Ralph and Rachael said...

Nic - you are an incredible person...I have so much admiration for you - not only in the way you attack all aspects of life but also in your ability to write in such a personable way about what must be a very difficult time for you - and with humour thrown in as well! Please know we are thinking of you and the family - there have been some times in my life when I think I should stop being an atheist so I can pray...this is one of those! Love Rachael & Ralph

Nic Miller-Clendon said...

Yeah sometimes being an atheist really sucks! But at least your sunday mornings are free.
Thanks for your thoughts.